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Challenges & Solutions in participant-centered interventional trials?

This topic contains 1 reply, has 2 voices, and was last updated by  Kiely Law 1 year ago.

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  • #941

    Thomas Carton
    Participant

    Hello everyone. Excited the Commons has launched and we can begin to have conversations that will lead to innovative ways to make research more people-centered. To get this conversation started, I wanted to pose this question: What challenges are you facing in conducting participant-centered interventional trials and what are your recommended solutions?” I welcome your thoughts and ideas.

    #948

    Kiely Law
    Participant

    Great question! In my experience, a participant-centered interventional trial does NOT necessarily equate with a participant-friendly protocol.  For example, we have worked with industry sponsors wanting to engage  adults with autism in novel medication trials.  Although the need for effective interventions is a top priority in the community and the study outcome measures were patient-centered, the study protocol itself was too onerous (multiple clinic visits that also required the participant to bring a caregiver/outside informant).  Ultimately, the study failed because of the protocol and lack of community participation. I think this experience underscores the NEED to include the patient community in all aspects of the research study, including planning and designing the protocol.

    • This reply was modified 1 year ago by  Kiely Law.
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